Arthur the Asshole

May is Arthritis Awareness Month, so here’s a little more about my experience with Arthur — the asshole. TW: ableism, child abuse, animal testing mention.

As long as I can remember, there has been one entity vying for my undivided attention. He screams, butts his way into conversations, cuts my activities short, and sometimes prevents me from doing much of anything at all.

This may sound like one of those edgy anti-smoking commercials. The entity I speak of, though, is my own body.

2–3 years

As a child, I didn’t understand why my Systemic Juvenile Arthritis hurt so badly. What I did get was that ‘arthritis’ sounded a lot like ‘Arthur.’ So, I started to call my illness issues Arthur.

This separation between my illness and body was helpful as I grew up. It helped me not feel like my body was horribly broken. I could blame everything that was going on with my body on Arthur. It gave me an outlet, a way to describe my pain without assuming it was something innate or something I had caused.

That isn’t to say that others didn’t try to make me feel that way.

Religious people acted like it was something my family had brought on. Being a kid out of wedlock, I surely deserved it. If it wasn’t that, it was that I didn’t believe enough in a god that seemed to hate me because of choices I wasn’t involved in making. This religion tried to bless and pray the illness out of me monthly.

It didn’t do a lot for my spiritual life, I’ll tell you that much.

11–12 years

It did, at least, make me aware of hypocrisy in organized western religion.

As I grew into an adult — one who believed more in Buddhist tenets than any other religion — I continued to be ridiculed by my family for being ‘different.’ I wasn’t Christian. I valued animal lives and plant lives. I relied on meditation and pushing my body through yoga, through the pain it experiences with movement, to get some relief.

While it may seem unrelated, this is all tied in to my illness.

As a kid with a disability, I was told that no one would love me. I should get used to living with my mother my entire life, just as we were living with my grandmother. My life was, essentially, nullified by the fact that I was sick.

This allowed for abusive tendencies in my household to affect me heavily. I didn’t see a choice in the matter for a long time and, even when I did, my family followed me.

While Arthur was one partner in my life — the one who knew me the most — my mother forced me to become her partner through covert incest. I was partnered to people that I didn’t choose and endured/did things that I would never have on my own.

Between Mother and Arthur, I assigned myself a low value. It led to a lot of upsetting and abusive relationships in my teens.

It wasn’t until I met my now-husband that things turned around for me and Arthur.

19 years

By the time we met, my illnesses were becoming more active. The move from Oregon to Wisconsin certainly exacerbated things, as did the stress of being in college and working.

I always knew that there were things wrong with my family, but couldn’t put a finger on them. I knew that my illnesses made it easier for people to prey on me. Still, I could never imagine Mother to be a part of that.

It was a very rough day when I knew I had to cut contact with her — for my health. I couldn’t keep being pulled in to unhealthy codependency. It was killing every relationship I had, even with myself.

26 years

By the time we were back from our honeymoon, T helped me to accomplish things I never though I’d do — ride a bike, meet my dad, and have babies.

Yes, our guinea pigs count.

Gus Gus (left) and Jaq (right)

Gus and Jaq (and their late brother Oreo) have helped me continue to thrive despite Arthur.

There’s also something so comforting about giving guinea pigs a loving home with chronically ill parents when piggies been the subject of so much research that we benefit from. It bothers me that so much testing still occurs on animals period, but especially on smart bubs like guinea pigs and rats.

The piggies give me a reason to get up in the morning, take care of myself, go to the store, and get things done. They keep me going, both by being adorably interactive and by providing me with love as sweet beings that depend on me.

People act like pets aren’t as ‘good’ as human children. Frankly, I think that’s BS. Regardless of opinion, this is better for me. Animals understand us in ways that other humans just can’t. They have taken turns watching out for me on days I’m struggling and always remind me to get up and stretch — so I can give them snacks!

The boys can run on the floor or we can snuggle — Gus demands that I sing Beauty & the Beast songs while he sleeps on me — or they are content to entertain themselves in their own spaces.

In short, they don’t need 24/7 attention… even though they often get it.

We most likely aren’t going to have our own humans. That’s just something that I don’t think my body can handle. I’d have to come off some of my meds and, frankly, I already suffer and struggle despite the meds I do have. I also just cannot imagine dealing with the chronic neck and back pain I already have while pregnant.

Current daily meds/tools

Eventually, we may do foster care or adopt to give kids a stable and loving place. Much like we’ve done with the boys, it’s giving a loving space to someone who doesn’t have it — and making sure they’re taken care of.

Even before my arthritis (and additional illness fun) was super bad, I couldn’t envision myself with kids. Maybe it’s that underlying notion of how I wouldn’t be fit to care for myself. Maybe it stems from growing up in abuse and feeling somewhat incapable of handling kids — or being afraid that I’ll perpetuate abuse or illness. Being queer, specifically genderqueer and pansexual, I know that I would be subjected to a lot of societal bullshit, too.

Plus, there are not good masculine clothes for pregnancy. The gender dysphoria alone would be horrible.

In a secret health company’s lair

The beautiful thing about not having kids but having health issues like Arthur? I get to do amazing things and work with amazing organizations like Pfizer, Healthline, Janssen/Johnson & Johnson, Creaky Joints, Self Care Catalysts, the Arthritis Foundation, and more.

I travel a lot to attend summits, workshops, ad boards, and conferences. I’m starting to present at conferences now, three years after attending my first one. Through ORCHIDS, I’m also working on conducting research at the intersection of chronic illness/disability and sexuality.

It’s all very surreal to me right now.

I’ve worked very hard to develop ideas and projects and they’re all hitting now. Arthur is more in the background and perhaps not as vocal. Still, he does a great job reminding me of his existence if I ever start thinking he may have gone away.

There is an emptiness that comes when the thing you’re closest to is gone, especially when you have a tendency to personify it.

There is a mix of joy for some semblance of pain relief, sorrow that he’s not around, and guilt that I’m doing so well while children I know have been in and out of the hospital seriously ill and fighting for their lives.

I think that I clung to Arthur and used the physical pain as a distraction from my emotional and mental distresses from my childhood. Another child in a similar situation may go to a friend’s house as a source of respite, but I didn’t have friends. I was basically not allowed to have them because I could share something that happened and I’d be taken away from my mother.

That threat was always there.

Arthur was that escape for me. Stress and emotional distress bring on flares so it was easy for me to be distracted, to escape into the pain that was most comfortable to feel because I didn’t know different.

I did know that my household was awful, that this was not how things were supposed to be, but I didn’t know a life without Arthur.

Arthur, my security blanket, is tattered and worn.

I have to actually face everything I grew up experiencing, both as an adult and as the child in me.

I know I’ll be better for it and I’ve already made so much progress…

There are too many times where I want that blanket back, though.

Around the time I wrote the above, I was getting prolonged relief from my daily injection. It felt… weird. I had to relearn my body — how to move and how to take care of it.

Most of all, I had to learn more about how I grew up.

Arthur, as awful as he is, protected me from a lot of what I faced growing up in an abusive household. He was a shield and security blanket all in one.

I wasn’t able to put this into words until I played a game called Beyond: Two Souls. I’m about to spoil the game, but it’s still incredibly fun to play. If you want to skip spoilers, head to the next photo.

A little background — the game has 24 different endings based on your gameplay. The ending details I’m discussing, though, happen in every ending.

You play as Jodie (most often anyway). She is connected to some other invisible being called Aiden. Aiden protects her, but also causes a lot of trouble. She moves from a foster home to a paranormal institute due to the powers Aiden gives her, which just means she grows up alone with adulthood forced on her quickly.

At the end of the game, while saving the world, Jodie gets to ‘see’ Aiden for the first time. It’s revealed that he is her twin brother who was stillborn. In order to continue saving the world, you must choose to shut down this paranormal project. Doing so, then, rips Aiden from Jodie.

She loses many of her memories. She also loses a large part of herself. Despite the chaos Aiden caused, he protected her and was her companion through a lot of shit.

The following is from the epilogue:

For as long as I can remember, I dreamt of living without him — untied, without his constant presence by my side.

I got what I wanted. I’ve never been so unhappy in my life. I feel like part of me has been amputated.

Crying all day. I know it’s stupid, but shit — I miss him so much.

You choose an ending and some things tailor-made for that are displayed. Eventually, though, Jodie looks down and sees ‘still here’ being written out by an invisible force.

Sound familiar?

This is something we don’t talk about in the illness world that much. We act like cancer patients have a one-and-done thing and don’t face issues after cancer which is a lie… and then we don’t face issues we autoimmune patients may have in a controlled disease state.

Arthur is an asshole and I hate him… and yet, I wouldn’t be who I am today without him. He has prevented me from doing things and caused me pain, but has also led me to things that have greatly enriched my life.